I was HU intolerant and it was ineffective for controlling erythrocytosis. I tried phlebotomy-only for a while, but the iron deficiency symptoms were worse than the PV symptoms. I have done much better on the interferons. I started on Pegasys then switched to Besremi. I am maintaining a complete hematologic response at only 150mcg of Besremi. In 18 months on the IFNs, my allele burden has dropped from 38% to 9%. The side effects have been minimal and easily tolerated/managed. My quality of life has improved on the IFNs. I am hopeful that I am moving towards a molecular remission. My only regret is that I waited as long as I did to start on the IFNs.

It is worth noting that we are all different in how we respond to the treatment options. We each need an individualized approach. One size does not fit all.
You may find this presentation by Dr. Silver of interest.
https://www.youtube.com/watch?v=R4SdF6FrnbE&amp...

I’m on pegasys. Interferons are the only drugs that slow disease progression. I’ve had HU but I didn’t fare well with it eating my stomach lining. Jakafi I’ve never had but from the people that didn’t like it I’ve been told the increased heart rate was the issue. I naturally have a high heart rate so am unable to take that. I have no issues on pegasys but hopefully my insurance will cover besremi one day. Till then I’m on pegasys.

I am on Pegasys interferon low dose. This week will be my sixth injection. my counts are being controlled wonderfully.

After my 5th injection, my counts were
WBC 5.5 normal
HCT 41.4
PLT 445 normal

My platelets had been in 700s and HCT as high as 50. First my platelets have been normal for many years.

I agreed with my MPN specialist I Wanted to start low on 30 mcg and I wanted to go low and slow. My first injection I took 30 mcg and I had some pretty high anxiety at times on days 2-4 after the injection. Managed with Xanax. Also had low grade fever and some body aches. Managed with Tylenol.

Next injection I took 20 mcg and it helped the anxiety and I had a little bit of mild depression and crying which I think was mostly from fear and bowel symptoms. Managed with Activia.

By the third -fifth injection 22 mcg that had all gone away, and I had very few if any side effects with the last injection.

That doesn’t mean you are going to get those side effects. Remember any side effects are only temporary and the body will adjust. And you can manage them.

I say go for it. It’s worth it totally. Take Tylenol for any fever or minor pain. Take a mint or cough drop in mouth prior to injection. Relax. Drink lots of water daily. Put needle in slowly inject, wait 10 seconds and slowly pull out needle.

My best advice is You might start out on a low dose of say 22 mcg for least side effects the first couple of weeks or months and then work your way up 2 mcg per dose if your counts aren’t being controlled. That way your body will get used to the interferon and you’ll have less side effects. Also, I get my blood tested every week to see what my counts are. If good no need to increase. Over time you may need to extend time between injections.

Pegasys has been a miracle for me. I had been having to get frequent phlebotomy’s, which were making me ill and made me anemic. I have not had to have one phlebotomy since starting in Pegasus.

I'm on hu seems to be doing the job ans usually the first thing they try before the other also less expensive

Thank you so much for sharing that Steve. That is AWESOME NEWS!!! CONGRATULATIONS and ill be sending positive, hopeful vibes your way 🤞🏻😁